We're home

The MRI didn't show any evidence of stroke or clotting, so we were discharged and Riley is asleep in his own bed. It wasn't without a fight though: they wanted to keep him an extra night "for observation" despite eliminating all signs of any immediate risk factors. What Riley needs now is rest and recovery, and he certainly won't get that in the PICU.

We came home to find a really cool Get Well book from Riley's kindergarten classmates. Each of the kids had drawn a picture and written a note. We enjoyed reading through the messages like "Riley, you are a good friend, Love Edward" and "I hope you feel better soon Riley, I love you, Cassandra." You can't say we didn't properly prepare them for their classmate's hospitalization.

The boy is in pretty good spirits and looking forward to being back in school on Monday.

MRI at 2:15pm

The MRI is schedule for 2:15 p.m. Riley is still in good spirits, but starting to get hungry. He's watching a Frog & Toad DVD. Next few hours will be tough.

Yesterday when were in the Redwood City ER awaiting transport to Santa Clara, I ran out to Whole Foods to get some dinner for the four of us. On the short drive over there, I was rear-ended at a stop sign by a woman who wasn't paying attention. There's some damage but I can drive it. Fortunately nobody was hurt (she had two kids in the backseat.)

Riley's back in the hospital

Just a quick note since my connectivity is flaky. Riley has been sick for about a week complaining of stomach pain and dizziness. He had an abdominal ultrasound and an albumin test and everything came up normal. But yesterday Suzanne noticed his left eye was droopy. His after-school provider called in the afternoon to say she'd noticed it and Riley needed to lie down.

We called the doctor and cardiologist and they asked that we bring him in. Since Riley has a history of blood clots, there is concern. By the time we got him to the doctor, the droopiness had stopped. They did a CT scan and things look okay. But as a precautionary measure, they transported him by ambulance and admitted him to the PICU at Kaiser Santa Clara. The plan now is to get him in for an MRI. Of course, that will require sedation since he'd need to hold perfectly still for an hour. He has been NPO since 2 a.m. while we await availability from the MRI lab. I spent the night with him in his room and Suzanne took Carter home.

Best case: we get in for an MRI today, things look fine and we can go home. That's what we're hoping for. Suzanne is here now, Carter is at daycare. More updates when we have them.

Talking to Riley's classmates about being different

About a month ago, Riley started complaining about physical education (PE). At first it was subtle - "there's too much running." But after a few days I noticed that his head sunk a little lower on PE days. He also talked about frequently getting a drink of water, which we suspected was a covert way of resting. Eventually he came out with it: "I don't like PE and I get too tired." We encouraged him to tell his PE teacher that when he needed a break, and we reminded his classroom teacher about his condition. Both of them have been very aware of Riley's limitations.

But one day, Riley reported to his after school care instructor that the kids had been picking on him and calling him "slowpoke." We discussed it with him one evening and he broke down in tears as he talked about how hard PE was, and how much he wished he could run and jump like the other kids. We asked him if it would be okay to have a meeting about it with his school, and he agreed.

We decided it was time for a Section 504 meeting at Riley's school. Federal law gives children with disabilities the right to reasonable accommodations that will ensure equal opportunity in school activities.

Despite the necessary legal formality, the school principal, Mr. Triska, and his classroom teacher, Mrs. Mecchi were terrific. They told us what we already knew: Riley is very strong academically, is one of only two readers in the class and displays exceptional social skills and behavior. Because he becomes winded easily, he often falls behind when the class is walking in a line, especially when they climb the hill to music, the playground and PE.

After discussion, we agreed that Riley would have modified PE. Riley will have the choice to participate in PE or an optional activity. Depending on the day, it could include: going to the library, returning to the classroom with his teacher, or even helping out in the office (I'm sure Riley will be an excellent filer!) So far Riley has chosen PE a few times but opted for library time on some other occasions. He is much happier now that he's in control.

We also decided to talk to the class directly about Riley's heart. Riley will know these children his entire life and we want him to be proud of who he is. So this morning Suzanne and I joined Riley's classroom for a circle time discussion about Riley and his heart. I started off by asking the kids if anyone had had surgery or been hospitalized, knowing that one girl recently had eye surgery. I then explained how the heart works, and we talked a little bit about that.

Then Riley talked about how he has had five surgeries to fix his heart, and the kids asked all sorts of questions: did it hurt? how did the doctors do it? did you get stitches? Then Riley read one of his favorites books to the class - Mr. Rogers' Going to the Hospital. He did great, reading several pages perfectly until Mom took over and finished the book. He also showed off his scar. One of the Dads who was volunteering today talked about how he had a scar just like that from heart surgery ten years ago. Finally, we explained that Riley's heart means he gets tired more easily and sometimes needs a break from physical activities, but that otherwise he's just like everyone else, that we're all different in interesting ways.

All in all, it was a good experience. It was amazing to see our confident little guy talk proudly about who he is and what makes him different. Although it's something we knew we'd have to face, we just didn't expect it so soon, and the recognition that our boy is growing up is another reminder that thinking about Riley's future can be bittersweet.